What Health Equity Means to the Disability Community

What Health Equity Means to the Disability Community

Maria Town, President and CEO, American Association of People with Disabilities

I will never forget when an adult primary care physician asked me how I got cerebral palsy (CP). I was stunned. Cerebral palsy is the most common motor disability in children, and most instances of cerebral palsy occur due to brain damage sustained before or during birth. In one simple question, “How did you get CP?” this doctor revealed how little he knew about disability, and I knew instantly that he could in no way be my primary care physician. Some of my earliest memories are in doctor’s offices and in clinics for therapies and treatments. Like so many disabled people, my initial experience and understanding of my own body, health, and disability status was defined by medical professionals via the US healthcare system. Yet, as I have become more deeply engaged in the disability community and in disability advocacy, I have come to recognize how little the healthcare system understands nor accepts about the lives of disabled people. People with disabilities are more reliant on healthcare coverage than people without disabilities and experience some of the greatest healthcare costs. One might assume the healthcare system would consistently adapt to people with disabilities, and yet, despite how much we rely on it, the healthcare system has historically discriminated against disabled people and the disability community has yet to experience health equity.

The healthcare system is filled with barriers and biases that significantly diminish the quality of care we receive. From inaccessible doctors’ offices and examination equipment, to medical school curriculum that perpetuate outdated ideas of disability, to a lack of access to effective communication, to physicians who believe that people with disabilities have an inherently lower quality of life than those without disabilities – All of these barriers translate into disparities for disabled people. People with disabilities have shorter lifespans and are more likely to die from preventable conditions. These disparities are not due to the presence of disability itself but because of a lack of consistent access to affordable and effective preventative healthcare and because of broad systemic policies that prevent people with disabilities from utilizing the types of care that creates the best health outcomes and improves quality of life.

Federal legislation like the Americans with Disabilities Act (ADA), the Affordable Care Act (ACA), and the Inflation Reduction Act (IRA), which recently capped the cost of insulin at $35 a month for seniors on Medicare, have been essential in furthering access to healthcare. The IRA’s policy changes resulted in industry reducing the price of insulin for everyone and is an excellent example of how community advocates, policy makers, and commercial partners can do to foster health equity for all Americans, including Americans with disabilities, and there are many opportunities for similar work to occur in the months and years ahead.

Section 1557 of the Affordable Care Act prohibits discrimination on the basis of  race, color, national origin, sex, age, or disability. The Department of Health and Human Services (HHS) recently issued a notice of proposed rulemaking on Section 1557 at the end of 2022. The proposed clarifies and strengthens nondiscrimination protections for people with disabilities and other populations that have experienced discrimination and barriers to receiving equally effective healthcare. The proposed rule incorporates the ADA’s “integration mandate” or a requirement that “services, programs, and activities be administered in the most integrated setting appropriate for the needs of individuals with disabilities. If this integration mandate remains in the final rule, it will help to end the institutional bias that exists within our healthcare system, wherein people with disabilities, those with complex medical needs, and people with mental health needs are discharged from the hospital, separated from their communities, unnecessarily segregated into nursing homes or institutions. It has been repeatedly shown that individuals receiving treatments and supports, through things like home and community based services, have better quality of life, improved health, and longer lives than those who reside in a congregate setting or institution. Having the Section 1557 rule finalized quickly, with integration  embedded within it, coupled with an increase in funding and access to HCBS through Congress passing the Better Care Better Jobs Act and the HCBS Access Act could go a very long way to supporting greater health equity for people with disabilities, our families, and the direct care workforce who make all of these services possible.

The institutional bias within our healthcare and insurance systems is indicative of a larger societal prejudice that people with disabilities are inherently less worthy and that our lives are worth less than our nondisabled peers. One glaring example of this  ableism (discrimination in favor of non-disabled people) in the healthcare system is the use of Quality-Adjusted Life Years (QALY). QALYs are used when making medical decisions and allocating resources. QALYs literally devalue a person’s quality of life when disability is taken into account. Because of this, people with disabilities or complex health issues are at a high risk of being denied coverage because according to the QALY metric, they are not worth spending time, effort, or resources on. This explicitly places a higher value of life on people without disabilities. People with disabilities should never be denied coverage based on the use of QALY metrics or similar metrics that so clearly discriminate against people based on their disability status, life expectancy, or age. Thus, many in the disability community, including AAPD, have come together to urge Congress to pass the Protecting Healthcare for All Patients Act, which would prohibit the use of QALYs in federally funded healthcare programs.

People with disabilities have a right to quality, accessible, and affordable health care and health insurance that is free of any type of discrimination, so that we can live long, fulfilling lives with the people and in the communities that we love. This is what achieving health equity will mean for the disability community.  The issues discussed in this blog are only a few in the litany of issues that impact the disability community on a daily basis as a result of the  systemic biases and inherent ableism  in our healthcare system. Thirty-three years ago today, thousands of disability advocates joined our nation’s elected leaders to witness the signing of the Americans with Disabilities Act.  At that time, the ADA was bold and ambitious, and it transformed our nation’s landscapes, our public squares, and the ways in which we communicated with one another.Thirty three years later, we continue to have to push for greater compliance and enforcement because by this point everyone should understand that accessibility and community integration are civil rights. We need bold and ambitious solutions to achieve health equity for all. Without it, other essential parts of life like education, employment, and participating in your community can become near impossible, and goals such as those established by the ADA become hollow. AAPD, alongside our partners and allies, is committed to ensuring all people with disabilities have access to quality, comprehensive, and affordable health care. For more information, visit AAPD’s website.